Celebrating Sasha and supporting SickKids patient and family centred interprofessional care, staff and family partnership, patient safety, palliative care and Alagille Syndrome. Thanks to family for love and visits, laid back Dr Michael Peer, Dr Jennifer Russell's tireless coordination of LFHC, GI, CCCU, Gen Surg and IGT, all the staff at Hospital for Sick Children and Max and Beatrice Wolfe Centre and final homebound team Stephen Jenkinson, Dr Russell Goldman and TCCAC.

I was moved by an article describing the life and death of Rotem Engel, the public internet updates by his parents Dana and Oded and the internet circle that supported them as their young son struggled to live and then died in ICU. They do not know what caused his symptoms but they moved mountains to bring him up to age 6 and loved and cared for him fiercely. They poured their heart out on the internet as he was in CCU, relating how they begged their son whose organs were failing to not give up, the father's lament that he failed his son, questions as to did they do enough. I could feel again that sickening wait between endless tests to see if a failing organ will rebound and your child survive - without even knowing what comes next. The article ends with discussion of public grief writing and support on the internet and touches on sibling loss and grief work with a detailed look at how intensive the ICU experience can be if the parents wish doctors to provide every support available. Collective Coping is a painful, inspiring snapshot of the brave struggle of one medically fragile child and the love and support of his parents and the support of strangers in an Israeli internet forum.

"No matter how big or small, how weak or strong -- everything dies. We experience the sun and the moon, the wind and the rain. We learn to dance and laugh. Then we die."

- from the book The Fall of Freddie the Leaf

by Leo Buscaglia

My four-year-old daughter recently asked me what it means when people die.

Unprepared for the question, I felt the need to protect her and told her we would talk about it another time. Fortunately for me, Wilfrid Laurier University's faculty of social work provided a free public seminar last week on talking to children about death and dying.

The speaker was Ceilidh Eaton Russell, a councillor at the Max and Beatrice Wolfe Centre for Children's Grief and Palliative Care.

Russell said most parents don't think about explaining death to their children until a relative dies.

"We prefer not to talk about it until we have to," said Russell. "Lots of caring people do the wrong thing for all the right reasons, and many parents don't want to expose their children to death and dying."

Russell said children do not need protection; they need competent guidance and honest answers to their questions about life and death.

"Children ask questions in a very direct way," said Russell. "Seizing the moment is important, and the best time to talk about the subject is when they want to."

In the seminar, I learned that if a child has been protected against sorrow, they will still react when they realize what has happened. Nobody can avoid grief; you can only postpone it.

Often, trying to protect a child will only cause them unnecessary anxiety and perhaps even guilt.

Children less than eight years of age are often interested in death and have complex concepts about it, but are not able to grasp its finality.

When telling a child that someone has died, make sure the word "died" is used, said Russell, using clear and concrete language.

"Children do not understand euphemisms," said Russell. "(Euphemisms) may help an adult feel better but they won't help a child understand what has happened. Avoid using 'sleep' -- kids worry that anyone could go to sleep and never wake up. "Also (avoid): 'We lost him' -- kids wonder where the person is and why they aren't looking for him.

"And 'passed away' is too vague for kids to make sense of."

Russell also stressed that when parents don't have an answer to a child's question, they should say so. It's OK for children to know that there are questions that adults, and even doctors, don't have answers to.

Listening carefully when a child asks a question is important, and it's helpful to understand what they know so far. Russell said kids are good at learning words and how to use them without always knowing their meaning.

"If a child asks, 'Am I going to die?' tell them that they will someday," explained Russell. "And if they ask whether a parent is going to die, they should be told that all people die eventually, while reassuring them that they will always be loved and taken care of."

I was especially touched by a story Russell told about a little girl who lost her father in a car accident. He taught her how to draw, and her mother often told her that if she keeps practising, she will always share an energy with him -- and that, in a way, her daddy is still teaching her.

Curious to know how questions about death and dying are approached at school, I asked my daughter's junior-kindergarten teacher. She lent me the book, The Fall of Freddie the Leaf.

In the book, Freddie and his companion leaves change with the passing seasons, finally falling to the ground with a winter's snow. With striking photographs, it's an inspiring and simple story illustrating the delicate balance between life and death.

At the end of her seminar, Russell shared a few books as well, with titles like Gentle Willow and When Dinosaurs Die.

Even though she sleeps upon your satin;Even though she wakes you with a kiss.Do not say the moment was imagined;Do not stoop to strategies like this.

As someone long prepared for this to happen,Go firmly to the window. Drink it in.Exquisite music. Alexandra laughing.Your first commitments tangible again.

And you who had the honor of her evening,And by the honor had your own restored – Say goodbye to Alexandra leaving;Alexandra leaving with her lord.

As someone long prepared for the occasion; In full command of every plan you wrecked – Do not choose a coward’s explanationthat hides behind the cause and the effect.

And you who were bewildered by a meaning;Whose code was broken, hope uncrossed – Say goodbye to Alexandra leaving.Then say goodbye to Alexandra lost."

This song resonated so strongly for me the first time I heard it, Sasha being the short form of Alexander. Anthony became the protector of Ceasar, Sasha protected our marriage. We had felt her leaving and loss, we had long prepared but still were full of questions and regrets, we felt tricked by fate, we drank in her presence, we still learn how to say goodbye.

We have celebrated the last two nights with the Steins and the Blumbergs, surrounded by the noises of Sasha's cousins, enjoying Mia's first Passover. Last year we laid out a seder in the Terrace Cafe at SickKids, drawing occasional glances from the hard working med students that frequent the large cafe during the quiet off hours. Sasha was just ok, she wasn't in great spirits, it was getting late. We felt it was important to celebrate passover at the hospital, knowing this would be, like every major milestone, Sasha's second and last. Toward the end of the meal we were joined by two doctors from the General Surgery team. There was a comraderie and spirit that night that I hope to never experience again in its weight and sadness; the talk of leaving bondage and singing Dayenu (Enough) quite symbolic after 4 months at SickKids Hospital and a deepening desire, with many fears, to return home.

Here we are with two of the General Surgery team.

And a flashback to Sasha at her first passover at Kenny, Cindy, Betsy, Sarah and Mandy singing Ma Nishtana and greatly appreciating Sasha's first Passover.

You can hear her little voice on this one as she explores the hagadah. Such a sweet little voice.

The Sasha Bella Forever blog began in 2006 as a tribute to our first daughter and her caregivers as we brought her home from the hospital to die. Expecting just a few days together, we had five incredible weeks. These posts celebrate the life of children with complex care needs and their families and staff partners in care. The posts also share the work of The Sasha Bella Fund For Family Centered Care at SickKids Foundation across the spectrum of care, education and research. From Sasha's experience, the fund and blog focuses on partnership, inter-professional and inter-disciplinary teamwork, palliative and end of life care, patient safety, care for the care-givers, patient and family advisory, peer support and the special challenge of the ICU. Please share, or Like or comment if you are moved by a particular post or think of The Sasha Bella Fund during your charitable giving.Regards,Jonathan Blumberg (Sasha's dad)

The Fund supports family-centered interprofessional care, family advisory, patient safety and palliative care with low cost initiatives like awards, small grants to programs and research, website initiatives, murals, sharing our story and volunteering at the hospital. See a list of fund projects and please consider donating securely online at Sasha's SickKids Foundation page (a tax receipt is emailed immediately) or by calling Laurel at SickKids Foundation.

All donations to a directed family fund like the Sasha Bella Fund For Family-Centred Caregoes to projects at SickKids Hospital with no Foundation overhead.

What is family-centered care? Frank Gavin offered a great definition in the 2005 Family Advisory Council report:

"Family-centred paediatric care is an ideal, an attainable goal, an approach to organizing care, and a set of specific practices. At its root it recognizes the child-patient as first of all, and at all times, a member of a particular family. It therefore regards the family’s involvement in planning, providing, and evaluating the child’s care as not only desirable but necessary. Real family centred care values and accommodates the family’s love and its expertise. In the end, it allows the child, wherever he or she may be, to be always at home.”

Thanks to all the almost 1000 families who have helped SickKids through The Sasha Bella Fund since 2006 and who in October 2009 helped raise $20,000 for Sickkids Hospital and Bloorview Kids Rehab. Special thanks to the performers who donated their special skills, Sho Mo + The Monkey Bunch, Charlie and Little Fingers, Deb Maes, Bloorview therapeutic clowns and Master Choung Taekwondo club, and The Stockyards, Ravisoups and Mildred Pierce for an incredible lunch. Checkout pictures of the 2009 Fun Day by Peter Fenyevesi and Bryan McBurney.

"After much research and exploration and talking with people at the Sick Kids Foundation we have found the Fund that I think addresses the same goals and priorities that Diane and I have for helping to affect change at SickKids. It's called the Sasha Bella Fund and it's named after a beautiful little girl named Sasha Bella Stein-Blumberg. Her parents set up the Fund after she passed away in June 2006. They do great work, particularly in encouraging family-centred care in the intensive units of Sick Kids ... encouraging family centred practice on the general units, advancing palliative care and support for parents and promoting interprofessional education. It's a fund and a cause we are proud to support and we encourage everyone to take a closer look." Janis Purdy and Diane Flacks

Sasha was born with Alagille Syndrome and pulmonary atresia, serious liver and cardiac defects leaving her ineligible for transplants. Cardiac surgery was risky but without more oxygen to her lungs Sasha would die. Our core SickKids team was the 4D nurses, cardiologist Dr Jennifer Russell, surgeon Dr Glen Van Arsdell, catheterization specialists Dr Lee Benson and Dr Jin-Lee and gastrointerologist Dr Simon Ling. The plan included catheterizations to widen tiny arteries, surgery to install a central shunt at 3 months, more caths and more surgery to partly rebuild her collateral arteries into a pulmonary artery. A blue baby came home after birth and grew into a golden haired 18 month cherub with only short hospital stays. She appeared to thrive; yet as we rebuilt Sasha's heart, her liver weakened. A second surgery resulted in hemorrhage, fever, liver failure, portal hypertension, GI bleeds, and a jejunal fistula to her belly. We accepted Sasha was dying when she required daily blood transfusions. She came home supported by the Temmy Latner Centre, TCCAC nurses and SickKids - we expected 3 days with our peach but she stopped bleeding and lived five precious weeks.